childhood cancer

childhood cancer

Sunday, March 4, 2012

Communication

At the hospital. Luke is asleep for his lunchtime nap, and has been in top form this morning.  All being well, we're out of here at about 4pm.  Should mean we get home in time for Luke's dinner, bath and bed.  Once again I just can't wait to get him and Letitia home.

We had an MRI booked on Friday 2 March. That should be the last thing needed before surgery to cut the rest of Luke's tumour out of his spine. After a bit of to-ing and fro-ing during the week over whether Luke would be coming in for another round of chemo, it seemed to have settled on not doing any more before the surgery.

Imagine our surprise (and frustration) at being asked to stay in for more chemo when we arrived for the scan on Friday.  Basically communications broke down a bit last week, and everyone has apologised and said what they will do to make sure it works better going forward. Having created a problem, the hospital have been very good at resolving it. Ultimately, Luke's treatment is the most important thing in our lives right now. If we are told to jump one way or the other for it, we absolutely will. But we can only do that if ee are told which way to jump- being told conflicting information, or just bits of the story, means we weren't prepared this time.

Still, no problem. My parents in law were a huge help on Friday bringing up everything that we would normally need for a stay in hospital (which saved me a couple of extra hours driving and meant I could stay at the hospital all afternoon on Friday). And my mum has been to the house to do all if the ironing which was starting to build up again. Household chores tend to get de-prioritised while Luke and letitia are in hospital, and with about three of the last four weeks spent in, I haven't been as on top if it as Letitia would normally be.

So, we're expecting a call next week once the great and the good have looked at the MRI, and hopefully a date for surgery. I am dreading it, but can't wait to get that over with. Until then, barring spiking temperatures or other issues, hopefully we've got a good couple of weeks now without seeing the inside of a hospital.

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